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Saturday, February 22, 2014

A Community Conversation About Health and Responsibility: Vaccines and Beyond

Part 11: The Strengths of Autism

When the media discusses autism spectrum disorder (ASD), it is usually in terms of disabled children. But children have this odd habit of growing up into adults. The population of adults with ASD is quite large and growing larger every year. So, what does it mean to be an adult with ASD? And what are the likely impacts upon our overall society?

First, let's dispel a few myths. Most people with ASD are not like Dustin Hoffman's character in “Rain Man.” Yes, some people with ASD have absolutely astounding skills in some areas. Some people without ASD also have astounding skills in some areas. But most people with ASD, like most non-ASD people, are pretty regular folks with pretty regular skills. So please don't assume an ASD diagnosis instills a near-magical ability to instantly count hundreds of toothpicks. It doesn't. Adults with ASD also tend not to require a lifetime of institutions and caregivers. Yes, those cases exist. But most adults with ASD grow up to be members of society who get jobs, have relationships, have children, go on vacation, and generally do all the things that everyone else does.

People with ASD are people. They start small and grow up. They start with little self control and gain more as they mature. They start with few social skills and learn them over time. That 3 year old who never makes eye contact, can't speak, goes into hysterics if someone puts a dining chair in the living room, and would rather go naked than deal with tags in clothing? He may grow up to be a computer programmer who is a little shy, pretty well organized, and is happiest wearing well-worn jeans and t-shirts.

Yes, we should do research to try and find out why the rates of ASD are going up so quickly. This is important information to know. And yes, we also need to offer more support to parents raising children with ASD, since those kids tend to need a different kind of parenting than “normal” children. But really, how many of us are raising “normal” children? Maybe we need to look beyond parenting and start discussing “normal.”

The truth is, most of us don't really qualify as "normal.” Many of us struggle in silence, convinced that we are alone in our unique thoughts or behavior patterns. Perhaps it's time to stop seeking "normal" as a goal. Let us remember that "normal" thinking, "normal" attitudes, "normal" perspectives, and "normal" skills have gotten our society into a whole lot of "normal" trouble. As our society stands on the shoulders of giants in the subjects of science, math, literature, and art, it would behoove us to remember that many of these inventors and discoverers were, well...definitely not normal.

So what can adults with ASD offer? This varies with the individual, obviously, but as a group, adults with ASD offer an amazing array of benefits to society. Let us share a few examples.

Meticulous attention to detail. People "on the spectrum" are often better at noticing details which can lead to superior project outcomes.

Thinking in terms of images or functions, without reference to words. The ability to see beyond words, or think outside of the landscape of words, is especially beneficial when exploring new ideas or experiences. "Normal" people often need to create words before they can think about something in any useful way. People with ASD can ponder the problem first, and figure out the language later.

People with ASD often have a unique understanding of time and space. This can be expressed as the ability to "see" the center of gravity on objects, a sense of the perspective of a grazing animal that has 300 degrees of vision (humans only have about 180 degrees of vision), dramatically enhanced abilities to perceive motion, and more. These perceptual differences allow a kind of creativity that is neurologically impossible for "normal" people.

Combing through historical records and retroactively diagnosing various famous people may not always be accurate, but it is usually instructive. Einstein described thinking in pictures and, although he adored his children, couldn't stand to be touched by them. Thomas Jefferson couldn't make eye contact, loved math, and kept meticulous notes about practically everything. Mozart flapped his hands and exhibited a legendary lack of social graces. Sir Isaac Newton would always give a lecture as scheduled, even if there was no audience. Charles Darwin avoided people and spent 8 years in intensive study of barnacles. Were these folks all on the spectrum? Maybe, maybe not. But they all exhibited traits currently linked to autism and which “normal” society would consider, well, weird.

We are stronger as a whole when we make room for all of our parts. Even the weird ones. So let's keep Vashon weird. Let's keep the world weird. Let's overthrow the cult of normal and be more than forgiving of each other's differences. Let us cherish them! Only then will everyone be able and invited to contribute their strengths.

“A Community Conversation About Health and Responsibility: Vaccines and Beyond” is an ongoing series written by two close friends with a passion for improving community cohesion and building respectful relationships in a diverse world. This article was co-created by Karen Crisalli Winter and March Twisdale. BLOG: Vaccinesandbeyond.blogspot.com Email: KarenandMarch@rocketmail.com

Monday, February 3, 2014

Caveat: This article is slightly different from the one published in The Loop on January 30th - it has been revised to apply to our entire region, rather than specifically Vashon Island. Enjoy & Share!

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Good people are people who do their best. There are a lot of good people in our region, and we are a diverse group. That’s why “respect for diversity” matters. Sometimes another person’s choice will boggle our mind. When it does, hopefully we’ll realize we are boggling someone else’s mind, too! And aim for tolerance. A not-so-easy goal.

Sadly, over the past few years, our respect for medical diversity has faltered. What you do in the doctor’s office has become public fodder for evaluation, debate, and ultimately, judgement.

This message mostly centers around pertussis (whooping cough) and the commonly held belief that by vaccinating, you can protect yourself AND those around you. This is known as Herd Immunity. Or, if you don’t want to feel like a cow, Community Immunity.

It’s a great idea, and for some disease/vaccine combos it works. But, according to a new, highly-credible FDA/NIH study, attaining herd immunity for Whooping Cough with the current acellular pertussis vaccine is almost certainly a pipe dream.

Vaccines in America are produced by private companies, government is tasked with approval and oversight, and public health departments are expected to inform the public. The trouble is, vaccine science is complicated, sound bites under-inform, and fear is a powerful force.

The most popular pertussis vaccine myths in our region are: (1) if you vaccinate, then you won’t catch pertussis or transmit it to others, and (2) if more people vaccinated, we could achieve herd immunity!”

So, this is the question of the hour: “Why is there a resurgence of pertussis in the U.S. when American vaccination rates are higher than ever?” Answer: “Because the vaccine doesn’t do what we thought it did.”

This new and highly regarded study shows that baboons vaccinated with aP (acellular pertussis vaccine) were protected from severe pertussis-associated symptoms but not from colonization, they did not clear the infection faster than non-vaccinated individuals, and they readily transmitted B. pertussis to unvaccinated contacts. Individuals vaccinated with wP (the older whole cell pertussis vaccine) cleared the infection faster but still transmitted to contacts. Meanwhile, previously infected baboons were not colonized nor capable of transmitting pertussis to contacts.

According to Tod J. Merkel, lead author of the study, “When you’re newly vaccinated you are an asymptomatic carrier, which is good for you, but not for the population.” Fellow scientist, Jason Warfel went on to state: "Although pertussis resurgence is not completely understood, we hypothesize that current acellular pertussis vaccines fail to prevent colonization and transmission."

Surprised? You shouldn’t be. As Emily Willingham states, in Forbes magazine, “Although this work was in baboons and baboons aren’t people, it provides compelling evidence for what many experts suspected: Acellular pertussis vaccine just isn’t very good at preventing pertussis transmission.” http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm376937.htm

So, what’s the media to do? The past few years have been filled with stories such as The Stranger’s article by Goldy titled: Stupid Fucking Anti-Vaccine Hippies, and the Seattle PI’s article, “What It’s Like To Have Whooping Cough At 31,” which quotes Julia Ioffe’s blog post, “I’ve Got Whooping Cough. Thanks a Lot, Jenny McCarthy.” Lead editor of The New Republic, Julia ends her story with, “So thanks a lot, anti-vaccine parents. You took an ethical stand against big pharma....killed some babies and gave me...the whooping cough in the year 2013. I understand your wanting to raise your own children as you see fit, science be damned, but you're selfishly jeopardizing more than your own children. Carry your baby around in a sling, feed her organic banana mash while you drink your ethical coffee, fine, but what gives you denialists the right to put my health at risk...?”

Thankfully, Julia Ioffe can now rest easy knowing that she probably caught pertussis from a cute, vaccinated, schoolgirl whose Mommy was completely unaware that her daughter was a walking, talking, bright-eyed little pertussis carrier. Or, her elderly neighbor who had an awful cough that just wouldn’t go away. Or her co-worker who coughed so hard she cracked a rib just before catching a flight to Atlanta for a business meeting. Or, her other co-worker who feels perfectly fine, just got the TdaP, and is visiting his newborn niece after work today? None of whom ever considered that they could have pertussis...because they were vaccinated.

Does this mean you shouldn’t vaccinate for pertussis? Of course not! Tetanus only offers benefits to the recipient, so why not use the pertussis vaccine? If you wish to manage your health with vaccines. Of course, not everyone does. Some prefer to allow their children to experience pertussis naturally, watching for symptoms, working with their doctor, and staying home until they are no longer contagious. Remember, if both the vaccinated and the unvaccinated can be colonized by the bacterium and transmit it to others, then the obvious symptoms of the unvaccinated will at least raise a red flag. But, what if you or your child has a suppressed immune system, or asthma, or you’re just plain scared of the disease? By all means, take advantage of the personal protection the acellular vaccine offers you. Just don’t think you’re getting more than you’re getting.

For now, no one knows 100% what’s happening and there is no viable vaccine option for creating herd immunity to pertussis. Until we know more, parents of newborns (and other vulnerable individuals) should continue to be cautious! This means, if you thought a person’s vaccination status automatically made them safe...think again.

On the public front, let’s hope our doctors, public health nurses, public & private school administrators, media and activists will revamp their message to acknowledge the results of this game-changing study.

~March Twisdale (an advocate for medical choice and informed consent who also is a parent with partially vaccinated children)